We ignored AIDS. Let’s not repeat the mistake on long COVID | Editorial

Inadequate Funding for Long COVID Research: A Call for Action

Introduction

In the earliest days of the AIDS crisis, America ignored the problem, even though people were dropping dead by the thousands.

We’re repeating the mistake now with long COVID. Millions are suffering, but the government has largely turned its back, as new cases emerge with each passing wave.

So people are coming from all over the country this week to Washington D.C., in the footsteps of AIDS activists, to protest at the Lincoln Memorial on March 15th. They’re desperate for their stories to be heard.

The Impact of Long COVID

No, long COVID is not an illness with a certain death sentence, as AIDS was in the early 80s. But those who are sick with long COVID today are facing years of disability in the prime of their lives. They’re trapped in a world of crippling fatigue, chronic pain, brain damage, blood clots and despair, with no approved drugs for treatment.

And yet, the National Institutes of Health recently allocated only about $129 million per year, on average, for an initiative to study Long COVID over the next four years – which is paltry compared to the billions some other diseases get yearly for clinical trials and research, that affect far fewer Americans. We had an “Operation Warp Speed” for vaccines. Why not long COVID?

The March in D.C.

The demonstration in D.C. will be livestreamed for those too sick to go, as most are, with more than 16 million limping along and maybe 4 million seriously affected. So, whatever the size of the crowd is, envision 10 times more watching from home.

And they need our help. The rest of America isn’t seeing the full effects of this because so many people with long COVID are homebound, confined to their beds. “I hope there’s more people out there like me, who consider themselves allies,” says Paul Hennessy, who helped organize this on behalf of suffering friends.

“They need folks to pass the baton to, who can fight for them.”

The Urgent Need for Action

We finally got it together on AIDS, after activists joined forces to compel our government to take it seriously. Billions were invested, treatments were discovered, and by 1997, the death rate had plunged by nearly 50%. That’s the hope now for long COVID: That America will wake up.

The Demographics of Long COVID

The largest group of people afflicted is younger than you think: Those aged 25-39 have the highest rates of long COVID, closely followed by adults aged 40-54, according to the Centers for Disease Control and Prevention. And as they struggle to adjust to life-changing disabilities, they’re still getting the virus over and over.

The Invisible Reality of Long COVID

For those with long COVID, it feels like they’re living in a totally different reality than the rest of this country, they say – one that’s largely invisible. Millions have disappeared from their active lives like ghosts, and for the most part, nobody noticed.

The Role of Activists

Perry Halkitis, dean of the Rutgers School of Public Health and a former member of ACT UP himself, thinks long COVID activists are the best hope now for waking up Americans to the long-term implications of this disease and the need to fund research and better vaccines, when only 20% got the last booster.

The Taboo Surrounding Long COVID

Like many with long COVID, York initially hardly spoke about her illness, even to friends, because of the stigma. It’s often dismissed as not serious or, worse, not real.

The Urgency for Government Action

President Biden has hardly mentioned long COVID, even though leading scientists, clinicians and advocates nj.com

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